April 2014
Newsletter

“What would you do if one of your patients requested mercy killing?”

“What would you do if one of your patients requested mercy killing?” asked Prof.Titus, Head of the Department of Cardiology at Sree Chitra Tirunal Institute for Medical Sciences and Technology, during the meeting of the Trivandrum Nephrology Club at Trivandrum on the 3rd of April, 2014.

The question is something that is on many people’s mind, often unvoiced.

I gave my usual reply – that in the vast majority of patients, palliative care is the viable and humane alternative to Euthanasia. That when we hear the request for euthanasia, we see it as a cry for help: “Help me! I cannot bear this suffering!” The ethical response should not be “Let us see how we can kill you,” but rather, “I see your suffering; let us see how we can remove your pain.”

Prof Titus was insistent. “Okay,” he said, “What about the minority in whom you cannot relieve the suffering adequately, and the request for Euthanasia persists?”

“The Desert Rose”, the 5-day exhibition organized by Pallium India in association with Alliance Française de Trivandrum happened from the 26th to the 30th of April 2014. The exhibition that showcased the indomitable spirit and strength of people in the face of adversity, included artistic creations including paintings, ornaments and umbrellas created by some of our patients, most of them wheel-chair bound, and their children.

The event was inaugurated on April 26 by one of our patients, Mr Sameer, who is paralyzed from the waist down. Sindhu, Preetha, Jyothikumar, Suresh, Rama, Manoj, Dr Sijo are the patients whose creations were displayed at the exhibition. There were also art works on display by Midhun and Saji Lal, children of two other patients.

Her Excellency the Governor of Kerala, Smt Sheila Dikshit visited the exhibition on April 28. She viewed the paintings, ornaments and umbrellas created by our patients and also interacted with the patients.

Mr George K. Thomas, a wheelchair-bound person, made a presentation about a “Wheelchair-friendly Trivandrum” before the Governor. Smt Dikshit said that we should make the police, traffic police and the local bodies sensitive to the requirements of paraplegics. She offered support to the efforts of Pallium India in trying to reduce the pain burden in the country. Thank you very much for your kind gesture, Your Excellency.

Thank you every one, who supported this event by visiting or by sending your greetings. It means a lot to us.

“When I told my father about his illness, he asked me to just ignore it. He naturally wished to be at home with his family till the end.” Bindu Nair writes in The Hindu Open Page about how her knowledge of palliative care and the suggestion by a considerate doctor helped her make a choice between a painful surgery for her father and allowing him to live the remainder of his life in peace and to die in dignity.

“With the help of some medication he lived with us happily for about two more months. He enjoyed the care given to him and we had the satisfaction of serving him when it was needed.”

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When we published a blog about the article by Bindu Nair in the Hindu, Mr Trilok C. Srivastava from Jodhpur posted a comment about how he got introduced to palliative care, when his mother was unwell and in advanced stages of breast cancer.

But how many lakhs of Bindus and Triloks must be in agony in the country because we do not do care about allowing people to live and die without needless pain and suffering? How many mothers and fathers must be screaming in pain as we write this? How can we turn our backs to the issue till the issue is forced on us in our own families?

But first, read what Mr Trilok Srivastava has to say.

The article ‘For a tranquil farewell’ published in the Hindu dated April 13, 2014, made me somewhat emotional.

My mother at the age of 56 was ailing of some Orthopedic problem that had made her movement a little difficult. We were shocked to hear from the doctors that she had stage 4 breast cancer and wouldn’t survive long. We were totally indecisive about the path of medical treatment. Finally, the operation took place at SGPGIMS in Lucknow. There, in the cancer ward, I saw the most horrible stages of human life. Time passed; my mother was counting her days as several therapies went on, we helplessly “attending“ to her…

One day, we were all to get photographed for our Voter Id Cards. I requested my mother to come along with us. She replied softly, “Now it is of no use for me”. The reply shook my soul and harshly exposed me to the ultimate reality of life. Gradually, she developed other complexities like breathing problem and even sudden bouts of unconsciousness. One day when she fell unconscious and we rushed her to a nearby hospital, Dr Mahesh Balani,the physician at Jeevan Jyoti Nursing Home at Jodhpur, advised me to go for “palliative treatment”. I was hearing this term for the first time in my life. We followed the advice. One day, she opened her eyes after a bout of unconsciousness and with a feeble smile, told me, If this had been death, this is the way I would prefer to go, with peace and tranquility. I had no words either to endorse or to negate her statement. After some time, the condition deteriorated…all of us were helpless with no hope…ultimately, with deep sorrow,I prayed to the Almighty to call my mother to Him.It was not easy to pray for my beloved mother’s final journey.

On Nov 30,2007, she was brushing her teeth by herself in the morning. Some moments later, we noticed that her hands were still, with the toothbrush still in her mouth. We immediately rushed her to the hospital where she remained unconscious for the whole day without any recovery. My father was sitting beside her. All of sudden, she opened her eyes and looked for a moment at my father’s face with full eyes and then slowly closed them. I rushed to the doctor. Dr Balani came hurriedly, checked the pulse, looked at the ECG on the screen and declared her departure forever.

The article by Ms Bindu Nair reminded me of those days with my mother. It is true that we can’t own the disease and pain of our loved-ones, but we can certainly share their tough times. We can certainly mitigate their level of pain by way of palliative treatment.

Thank you very much, Ms Nair.

Mr Trilok Srivastava is an Asst. Administrative Officer in the LIC of India and is presently posted in Jodhpur, Rajasthan. Deeply concerned about social issues and having witnessed the tragic journey of a cancer patient, after obtaining his professional qualifications, he did his MA in Human-Rights.

Pallium India looks after the education of about 380 children who might have been forced to drop out of school/college owing to financial difficulties arising from life-threatening diseases in the family. Every year, we hold a summer camp for these children, mostly organized by our volunteers. (The picture is from last year’s summer camp).

This year, the camp will be held at JMM Study Centre, Nalanchira, Trivandrum, from 1 to 3 May 2014. The event offers a nice blend of learning and fun to the mostly grey lives that these children find themselves in. If you live anywhere near Trivandrum, please email us and drop in one of those days to meet the children.

The events include Welcome by Sangeeta Bahadur, Minister of Culture, followed by an Introduction by David Oliviere, Former Director of Education and Training, St Christopher’s Hospice, London.

Viola da Cunha, a mezzo soprano, accompanied by Yuki Osedo (piano), will lead the evening of music. She will include a song cycle using poems written by a patient during her last days in a London hospice. A short presentation by Dr Sankha Mitra, Chairman of the EIPC Project, will be concluded by Rabindra Sangeet performer, Dr Susmita Ghosh Mitra from Kolkata.

For more details on this event, visit: www.nehrucentre.org.uk / www.hcilondon.in
For enquiries, contact: davidoliviere@yahoo.co.uk

Pallium India is proud to be EIPC’s partner in advancing palliative care in East and North-east India.

What would a nurse do if a patient is in pain in a cancer hospital in India? Usually nothing. If the pain is agonizing?

“…I’ll call the doctor. If he is available, I will say that patient is feeling very restless, he needs some morphine, I will suggest it: “He may need some morphine, sir. He is feeling restless, he is shouting.” If doctor says, “no, no, no not morphine, you give tramadol injection,” or anything like that, I will give”.

And even if the doctors consent to give morphine? Would it be available? At least after obtaining all necessary licenses?

“So, again it’s paperwork. Again, going to the Director,“sir, the transport permit is ready, we need to procure the drug, please kindly make the advanced payment.”Director signs one letter and from the in-charge of the department we get one letter to make the necessary arrangements for advance payment and again that copy should go to the purchase section, from there the purchase section to the billing department, again from the billing department, to the accountant and then accountant settles the money, after doing his own format, he will have some work to do, to arrange for payment with the Director…But again if you depend for this dispatch thing from the hospital, they say very silly reasons saying that we don’t have envelope covers, or we don’t have revenue stamps or some stamps to attach, so today this dispatch guy didn’t come, so this person did not come, who will go and post it and come? So again it takes another 3, 4 days or 1 week delay … And then finally, they send the drug. So because it’s a big parcel it takes minimum 1 week to 10 days to reach us…finally our stock is ready in the pharmacy. And even though our stock is ready in the Pharmacy, we can’t just like that open the stock and use it. Again there’s a process. We have to call the Drug Inspector who has come and make the report initially and submit it to the Director of Drug Controller, he should come, we should call him, he will not be available on the phone, he will not take the calls, and we should call him repeatedly, one week, minimum 3 to 4 days we have to call him. Once it took 15 days also, we have stock in the hospital and we are unable to open the stock and use it.”

And that is not all. The nightmare is unending. Read the paper by Virginia LeBaron and colleagues in The Oncologist 2014;19:1–8.

The recent amendment of the NDPS amendment will change some things in India. Only some things. It is going to be a long and hard struggle to change mindsets.

Thank you Virginia and colleagues for doing this work in India and to help turn attention to this issue.

A patient enduring terrible pain travels by train from Guwahati to New Delhi, 1800 kms away, only to be told that there was no treatment for him. “Why did they send me here when they knew there is nothing more to be done?” he asks. Dr Savita Butola adds, “Doctors, more than anyone else, should realize how precious each minute is for someone who is dying!”

These patients spend the last days of their life wandering from hospital to hospital, getting little attention, wasting a lot of money and time, whereas they should have been with their loved ones in familiar surroundings.

Problems obtaining pain medicines appear to have played an important role in several of the suicides in Moscow. Vyacheslav Apanasenko, the retired admiral who shot himself on 10 February, left a suicide note saying: “I ask not to blame anyone except for the Health Ministry and the government.” His family had been unable to get the final signature on a prescription for a strong pain killer on the day of the suicide……

Shockingly, Moscow’s deputy mayor, Leonid Pechatnikov, nonchalantly dismissed these human tragedies as the result of an “aggravation of psychiatric disorders” caused by the spring.

The hall was full at the seminar room in the Super-Speciality block in Medical College Hospital in Trivandrum. Thanks to the initiative by Dr Suharsha Kanathigoda, he and Dr Frank Brennan, two palliative care doctors with a special interest in people with end-stage kidney diseases, accepted our invitation to Trivandrum. On 2nd April, 2014, they spoke to patients and families, and with professionals from the Department of Nephrology.

The group discussed how palliative care can be integrated with nephrology practice. Thank you, Dr Ramdas Pisharody, the Principal of Medical College Trivandrum, Dr Jacob George, Head of department of Nephrology and Dr. Mohandas, secretary of Trivandrum Nephrology Club.

On the next day, the 3rd of April 2014, Prof Krishnakumar, the well-known Nephrologist in Trivandrum, took the lead to organize a meeting of the Nephrology Club of Trivandrum. It was a special privilege that not only nephrologists, but many specialists in clinical medicine also attended the meeting. Again, myths were cleared, problems discussed and solutions were sought.

Thank you, Dr Suharsha Kanathigoda and Dr Frank Brennan, and the vibrant group of nephrologists of Trivandrum.

“Choosing Wisely” is a program initiated by the ABIM Foundation. On their request, the American Society of Anaesthesiologists (ASA) has issued its list of top five tests and therapies that had better be avoided in treatment of chronic non-cancer pain.

“Service” is the name of the game. At the 3rd zone conference of Zone A, Region VI of Lions District 318A Dr Viswanathan handed over to Pallium India a cheque for a substantial amount on 05 April 2014. Thank you Lion Dr Viswanathan. Best wishes to Dr N. Murali (who is on the Limca book of world records) for his year as District Governor from July 2014.

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PARTING SHOT

We know there is a lot of poverty in India, but often we do not realise its extent and magnitude.

Dr Ravi Kannan, director of Cachar Cancer Hospital, in Silchar, Assam shares a story of a treatment-induced calamity. He reminds us that the story is set in the background of Assam, a state in which sometimes people sell their tin roofs in summer because they have to eat, hoping that somehow the roof can be rebuilt, and then find themselves without a roof over their heads during the monsoons.

But here is the heart-rending story of a woman who needed to complete the treatment of her husband. She no longer had any money and had to sell her child to bonded labor. Dr Ravi Kannan describes the difficulties, even after offering to pay back the money, to restore the child back because it was an honour of debt. She wouldn’t be able to live in the village if she did not keep her word. Well, the good doctor’s intervention did eventually succeed in getting the child back, but is this the story of just one mother and one child?

If only we could get this story into a medical textbook, perhaps doctors will remember it before they put their pens to paper to ask for an expensive investigation or treatment modality and ask themselves, “Can they afford it? Is there a way of managing without it?”.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.